Welcome to PIMDA. PIMDA stands for profound intellectual and multiple disabilities Australia. PIMDA is Sheridan Forster's weblog about issues to do with people with profound intellectual and multiple disabilities (PIMD) in Australia. The purpose of PIMDA is to increase awareness of people with PIMD and the issues pertaining to this population. The other purpose of PIMDA is to build a network of interested people who can then work together to improve the lives of people with PIMD.

Wednesday, June 10, 2009

Invasive Procedures

The following event is to be held in Scotland tommorow - shame Scotland is a few hundred, thousand kms away... will feedback any further info I can get.

Invasive Procedures: Breaking barriers and achieving control for people with profound & complex disabilitiesDiscussion at the conference will contribute to the development of planned expert consensus guidelines on invasive procedures.Individuals with profound intellectual and multiple disabilities have complex and significant healthcare needs.For many, a wide range of invasive medical procedures are required including the management of epilepsy through the administration of rectal anticonvulsants; severe spasticity requiring Baclofen implants; the management of respiratory problems through the use of ventilators and deep suctioning; and procedures requiring non-oral feeding (gastric and nasogastric). Execution of these procedures by social care staff remains a contested area, with some staff refusing or not being allowed to carry out one or more procedures, leading to people with profound intellectual and multiple disabilities being denied services.There is a recognised need for change in the way this vulnerable group receive care and access services, and in particular health services.This is supported by Mencap’s Death by Indifference enquiry report and a number of other reports from across the UK, notably: Healthcare for All; Equally Well; Same as You Review; and Valuing People Now. The research project “Practice and Policy in the Administration of Invasive Procedures for People with PIMD”, supported by the Scottish Government, is at present being undertaken by PAMIS’ Invasive Procedures Working Group. This work will be reported as background to the conference.Speakers will address the changing needs of people with profound and multiple learning disabilities and the ethical issues underpinning invasive procedures. Family experiences will be addressed as will the training needs of parents and care staff.Workshops will be conducted in order to develop a consensus on good practice in this area.

What do you think the issues are?

About Me

I am a person interested in the lives of people with PIMD. I wear multiple hats including researcher, therapist, advocate, and friend.
I strongly believe that in order to continue to improve the lives of adults with PIMD we need to acknowledge the specfic issues related to this group of people. The first step in this is acknowledging that there are a group of people who have PIMD, and although they are all individuals there are some issues that they share in common.
I hope this weblog enables discussion of what some of these issues are.

Advocacy articles

Longley, S., & Collins, G. J. (1994). The development of a non-verbal satisfaction measure for use with people who have severe or profound learning disabilities. British Journal of Developmental Disabilities, XL(79), 143-149.

Hogg, J., Cavet, J., Lambe, L., & Smeddle, M. (2001). The use of 'Snoezelen' as multisensory stimulation with people with intellectual disabilities: a review of the research. Research in Developmental Disabilities, 22, 353-372.

Shapiro, M., Parush, S., Green, M., & Roth, D. (1997). The efficacy of the "Snoezelen" in the mangagement of children with mental retardation who exhibit maladaptive behaviours. British Journal of Developmental Disabilities, 43(2), 140-155.